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Lupus or sjogrens syndrome
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Post  Fri, Apr 27 2018, 12:17 am
If you were diagnosed with uveitis, please see a specialist and not your local eye dr. It can cause more long term complications than you think if not treated correctly.

Something I wish I could tell my 16 year old self.
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amother




Puce


Post  Fri, Apr 27 2018, 12:33 am
I actually did see a specialist my eye Dr referred me to her
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amother




Puce


Post  Fri, Apr 27 2018, 12:33 am
I actually did see a specialist my eye Dr referred me to her
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Post  Fri, Apr 27 2018, 12:56 am
amother wrote:
I actually did see a specialist my eye Dr referred me to her


Perfect. Wishing you a refuah
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amother




Peach


Post  Fri, Apr 27 2018, 4:57 am
amother wrote:
Just wondering, why would you think a lupus diagnosis is misdiagnosed Lyme disease.
I find it interesting that any time someone has not typical symptoms, someone pipes in that it could be lyme. Most chronic symptoms are not related to lyme.
( says a mother who had two children with lyme disease)


I'm guessing your children were young and/or were diagnosed early on.

Chronic Lyme presents differently and can mimic hundreds of different diseases. When the body has been infected for 10/20/30 years there is lots of systemic damage. The diagnosis actually doesn't make much of a difference because LLMD's are highly trained to get to the core of the problem regardless of whether it is infectious, autoimmune, bacterial, fungal or other.
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amother




Crimson


Post  Fri, Apr 27 2018, 6:49 am
amother wrote:
I've seen a rheumatologist a while ago at that time I had a terrible rash with lots of inflammation but the the results were negative. The opthamologist claims that it's hard to diagnose and even though it was negative there's a big chance that I can have it. I'm curious if anyone had this experience.

Find a top rheumatologist to go back to.
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amother




Bisque


Post  Fri, Apr 27 2018, 8:16 am
My situation was always the opposite - they kept trying to diagnose me with lupus but were always wrong. I've had numerous doctors think I had lupus or other autoimmune conditions many times over the last 20 years or so. I can't count the numbers of doctors and specialists that kept sending me back to the rheumatologist over and over. They all kept thinking I had some sort of autoimmune connective tissue disorder. But it's never lupus (for me) or any other autoimmune connective tissue disorder. After many many years and misdiagnoses, turns out I have a genetic connective tissue disorder, not an autoimmune one.
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amother




Khaki


Post  Thu, Jul 11 2019, 12:57 pm
just came across this old post and wish everyone a refuah shelaima as chronic illness is no joke. Find a good rehumatalogist and never feel bad about getting a second opinion or asking tons of questions at an MD appointment. You need to be your own health advocate bc doctors are human and can make mistakes too... hugs to all Smile
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